Lessons Learned: Expanding Oregon's Care Coordination Program to Youth with Special Health Care Needs OCCYSHN Spring Partners’ Training - May 2, 2014

Oregon CaCoon (Care Coordination) Program Goal: Assure coordinated care for children and youth with special health needs (CYSHN) and their families Method: Provide public health nurse (PHN) home visiting services to families of CYSHN

CaCoon Public Health Nurse Activities CaCoon PHNs provide: Care coordination related to health, education and social services Nurse assessment for medical/health needs and developmental monitoring appropriate for condition Assistance accessing the health care and social service systems Referral, linkage and monitoring access to community services Parental support and advocacy toward autonomy

CaCoon Program Administration OCCYSHN: Contracts with local public health departments in 34 of Oregon’s 36 counties Provides ongoing program development, monitoring and evaluation Provides ongoing teaching and TA for community-based CaCoon PHNs

Who is eligible for CaCoon? Children and youth birth to 21 years with a chronic health condition Families are eligible regardless of income or insurance status There is NO cost to families

CaCoon Services – FY2013 1,793 children received 8,735 visits from CaCoon nurses Families received an average of 5 visits CaCoon PHNs made over 5,600 referrals to community services

YSHN – What can data tell us… National Survey of CSHCN% of CSHCN, years OregonNationwide Outcome #1: Families are partners in shared decision- making for child's optimal health 67.8%71.0% Outcome #2: Receive coordinated, ongoing, comprehensive care within a medical home 40.9%43.1% Outcome #3: Consistent and adequate private and/or public insurance to pay for the services they need 51.6%59.4% Outcome #4: Screened early and continuously for special health care needs 69.0%80.6% Outcome #5: Easily access community based services64.3%65.0% Outcome #6: Receive the services necessary to make appropriate transitions to adult health care, work and independence 35.6%40.0%

2010 Oregon Title V Needs Assessment – Findings N = 122 Families of YSHN (12 to 21 years) 13% received information for their YSHN about transitioning to adult health care 56% reported “someone” talked to them about transition planning. –66% School –48% Developmental Disabilities –4% Vocational Rehabilitation –3% Primary Care Provider 16% reported it was difficult or very difficult to find an adult provider for their YSHN

MCHB Innovative Evidence-Based Models for Improving Systems Services for CYSHCN Problem: Oregon YSHN often lack coordinated care and needed supports in preparing for and transitioning to adult health care systems. Care coordination through public health nurses has been effective for younger children in Oregon but is significantly less available for youth 12 to 21 years. MCHB Innovative Systems Services Grant: Expanding Oregon's Care Coordination Program to Youth with Special Health Care Needs or the “CaCoon for Youth Project“ (C4Y) Initiated September 2011 Project # 1 D70 MC

CaCoon for Youth (C4Y) – Expanding CaCoon to YSHN Project Goal: Expand the CaCoon Care Coordination program to youth with special health care needs, 12 to 21 years provide care coordination assure access to a medical home support transition to adult care

C4Y Project – Strengths to draw upon in CaCoon CaCoon PHNs have a broad knowledge of health and developmental conditions. CaCoon PHNs are in a "neutral" place in the community, they are able to engage a wide variety of community agencies. Local CaCoon programs have established 20+ year relationships with primary and specialty care providers, service agencies and other key partners.

C4Y Project – Pilot Counties Marion Klamath Coos Douglas Jackson Malheur Linn Clatsop Lake Harney Josephine Curry Benton Lincoln Polk Yamhill Clackamas Wasco Jefferson Crook Wheeler Grant Baker Union Wallowa Umatilla Morrow Gilliam Sherman Tillamook Lane Columbia Multnomah Hood River Deschutes Washington

C4Y Project – Program Development & Outreach Community engagement which provided opportunities to:  CaCoon PHNs to share information about the expanded CaCoon program.  Community partners to come together to identify local gaps, barriers and opportunities as well as share information about available services and resources for YSHN and their families.  Improve communication and linkages among CaCoon PHNs, primary care providers and other community-based services. Outreach to local PCPs and other community partners to inform them of the C4Y project. Identified local services and resources available to YSHN and their families.

Benton Context for C4Y – A Rural County Population - 85, 928 Population Density – 26.6 persons/square mile Poverty level % Unique Features - Co-located with county Mental Health, Developmental Disabilities and a Federally Qualified Health Center Unique Challenges - Lack of adult-oriented provides willing/able to care for YSHN

Benton County Approach Established relationships with PCPs, hospital and community partners Convene monthly meetings with Mental Health, Developmental Disabilities and local FQHC Partner with School Nurses to identify YSHN Facilitate and convene “care coordination” meetings with other community-partners, youth and family Epic Secure

Benton – Opportunities, Challenges, Lessons Learned Times are “a changing” CaCoon babies become CaCoon teens Limited resources Make yourself known

Deschutes Context for C4Y– A Rural-Suburban County Population - 160,338 Population Density – 52.3 persons/square mile Poverty level % Unique Features - Public Health Department oversees four School-based Health Centers Unique Challenges - Long distance to travel for specialty health care; Lack of engagement from adult-oriented providers

Deschutes County Approach Initiated and continuing ongoing Transition Campaign - Population-based approach to health transition First 2 years of grant, embedded CaCoon PHNs in School-Based Health Centers to provide CaCoon for Youth services Worked with local pediatric clinics to identify YSHCN in need of care coordination and transition assistance

Deschutes County – Opportunities, Challenges, Lessons Learned Opportunities: –Launch of project brought many referrals from local school districts. –SBHC RN’s identified clients seen at clinic. –Current staff are outreaching to providers and participating in community events.

Challenges –Turn over of staff, supervisors and change in SBHC organization & process –Little opportunity for formal orientation to C4Y –Families of youths are hesitant to engage if they haven’t had CaCoon contact previously. –Referrals reported to Child Welfare by the school causing difficulties for the RN’s

Lessons Learned –CaCoon for youth clients are youth regardless of their diagnosis –To make C4Y sustainable in Deschutes County, more opportunities for formal orientation to C4Y would be helpful for PHNs and community partners

Union County Context for C4Y – A Frontier County Population - 26,325 Population Density – persons/square mile Poverty level % Unique Features - Public Health Department is a non-profit; Has supported community-based “CYSHN CHT teams” Unique Challenges - Long distance to travel for specialty health care and other needs in county

Union County Approach Completed weekly team meetings for planning, implementation, and next steps Convening quarterly meetings with community partners to identify and discuss needs/barriers of serving of local YSHN. Developed a community action plan addressing YSHCN and family needs across the system of care. Working with Developmental Disabilities and County Mental Health to identify YSHN who would benefit from C4Y.

Union County – Opportunities Opportunities: Team Oriented Approach with educational/medical professionals Improved communication Effective outreach with more awareness of services for YSHCN Additional services available through DD services

Union County: Challenges Engaging educational personnel. Medical vs. Educational diagnosis of Autism for professionals and families Mental health issues tied to clients with multiple diagnosis Mental health issues of family members Paperwork and the process to get a diagnosis can be daunting for parents of YSHN

Union County: Lessons Learned CaCoon home visiting is valuable in coordinating care of YSHN Identified a community need, followed through with the need and in the end we were able to provide a workshop to county wide professionals Team Approach, common goal for the community, better communication amongst professionals Engagement of our local pediatric clinic and possible expansion around providing a primary care home for children with ASD. Prior to the C4Y project CaCoon was not recognized as a useful tool/resource for families amongst professionals due to lack of knowledge. Through the efforts of the expansion process we were able to strengthen relationships and promote CaCoon services

C4Y Project Learnings – Unique challenges in serving YSHN Challenge 1: Case Finding Difficulty for CaCoon PHNs to know how and when to identify clients Lack of established referral pathways and intake processes for older clients Lack of engagement from YSHN and families –YSHN/families need food, shelter, safety before addressing health and health related needs –Health and transition are a low priority for YSHN

C4Y Project Learnings – Unique challenges in serving YSHN Challenge 2: Referrals Lack of time and capacity of community partners to engage with CaCoon PHNs Lack of understanding among community partners of CaCoon Program and CaCoon services provided to YSHN and their families Families referred to C4Y experience “service fatigue” or have low follow through

C4Y Project Learnings – Unique challenges in serving YSHN Challenge 3: Finding and Providing Services Lack of services and resources available to YSHN –Dwindling services, especially in mental and behavioral health –Services for YSHN have “stricter” eligibility criteria Lack of availability/willingness of adult-oriented PCPs to serve YSHN Lack of parent support for YSHN increases difficulty for CaCoon PHNs to help YSHN truly “launch” into adulthood

C4Y Project – Key Preliminary Findings CaCoon Nurse Practice Level: YSHN are engaged for a short period of time, work with YSHN to prioritize and address needs. Transition planning must start early, must be comprehensive and ongoing. YSHN with a high functioning medical home were less likely to need C4Y services. Working with community partners is essential to meeting the needs of YSHN. - One entity cannot address and meet all the needs of YSHN. Community meeting and Care Coordination meeting work! – Provide a platform to collectively address the needs of YSHN.

C4Y Project – Key Preliminary Findings Program Level: Allow time for a Cultural Shift: need time for local CaCoon programs to “build” a system for serving older children and youth Build in time and capacity for relationship building and systems change Change service delivery model to meet YSHN/family needs –Meet YSHN where they are – schools, Voc Rehab, physicians office –Flexibility on initial assessment and number of visits Utilize expert or experienced CaCoon PHNs to serve YSHN – they have had time and experience to build relationships and learn about the systems of care

C4Y Project – Key Preliminary Findings Policy and System Level: Support and spread of medical home practices that include effective care coordination and adolescent healthcare transition Enhance mental and behavioral health system of care to meet needs of YSHN Include health in Education-based transition planning and processes – it’s the one place transition planning is happening consistently

Oregon Center for Children and Youth with Special Health Needs Presenter Information: Jan Liebeskind, RN, Ph: (541) Jean Clinton, RN, Ph: (541) Chelsie Evans, RN, Ph: (541)